On 22 June 2021, ImmunoIVD officially joined the European Alliance for Newborn Screening in SMA as a Member Company. View the other Members of the Alliance here. ImmunoIVD is a Swedish company based in Nacka Strand, south of Stockholm, that was founded in 2015 by researchers who wanted to develop a sensitive SCID assay, suitable for usage in routine newborn screening laboratories. In addition, they subsequently developed a screening kit for SCID and SMA.

The Spanish patient association for spinal muscular atrophy (SMA) is the Fundación Atrofia Muscular Espinal (FundAME). FundAME is currently following several strategies to support the implementation of SMA newborn screening (NBS). The Alliance and SMA Europe want to support these initiatives and share best practices between SMA patient associations.

The petition to fund newborn screening for SMA immediately was created by Dr. Laurent Servais and the deadline to collect signatures is 17 December 2021. If the petition reaches 10,000 signatures, the government will respond. Residents of the UK can sign the petition here. If you do not live in the UK, but know someone who is living there, ask them for their support.

While writing the Whitepaper, Spinal muscular atrophy: Screen at birth, save lives, we collected a list of publications on the topic of newborn screening and in some cases, specifically about newborn screening in spinal muscular atrophy. The list below has been extracted from the Whitepaper and will be updated as the Whitepaper is also updated over the course of 2021.